I'm the mother of Ralph, born April 29, 2007 with meconium aspriation syndrome and an atrial septal defect. He developed pulmonary hypertension as a result. He also has Down Syndrome. Ralph has 7 brothers and 2 sisters. These are our stories...

Sunday, November 30, 2008

Ralph is looking much better today. He is awake and playing with daddy right now. Yesterday he slept all day...very strange for him.

I was very concerned about his nose yesterday. I could tell by the sound that he was mouth breathing. I couldn't tell if his nose was stuffed, or irritated and puffed up. I doesn't matter how much oxygen you push through a cannula if the poor kid can't breathe through his nose. I could feel and hear the air going in and coming right back out of his nose.

This morning Ralph was a mess after his nosebleed last night. I asked the Resp. Tech to leave me some saline and help me clean his nose up. She didn't have much luck. A bit later I tried to suction him again and I pulled some huge clots out of both sides of his nose. Since then I've been able to go down to 2 liters of oxygen! Yay! I think I could go down some more, but he is so active that the sat probe doesn't get good readings.

Ralph is not going home today, though. The docs are being extra cautious, considering how sick he got last year. Today they are going to do some snot cultures and give Atrovent with his breathing treatments. Maybe tomorrow?

Ralph has a nosebleed, but is looking a bit better than earlier. He is still on 3.5 liters of oxygen but now his sats are consistently in the 90's. His breathing treatments are now every 2 hours. Seems to be working.

On a side note, why do I have to hunt down a nurse to give 11pm meds at 12:45? This kind of thing drives me nuts. What part of 'every 8 hours' don't people understand? Our nurses have all been very capable and kind, but this happens every day. It would be so much easier if they would just let me draw and administer his home meds. Grrr.

Saturday, November 29, 2008

I'm just sitting here in Ralph's room watching him and watching the monitors. I like the quiet so I keep the TV turned off. I've had to bump up his oxygen to 3.5 liters to keep him above 90%. It's kind of disappointing and I don't know what is going on. Maybe the gunk in his lungs is breaking up? Maybe he is just sleeping very deeply?

OK...I just found a bottle on the floor. I remember the nurse giving him his meds in a bottle of milk this morning. I don't remember hearing a bottle hit the floor. Could it be that he didn't get all his medicine? She said she was giving potassium and lasix but she didn't say anything about his Sildenafil. Hmmm. I must be off my game. I usually watch the medication schedule like a hawk.

Friday, November 28, 2008

Sorry I've been MIA for the past week! Right now I'm up at the hospital with Ralph. I brought him to the ER on Thursday night because I couldn't keep his O2 levels up. He was running about 83 at 2 liters.

We spent Thanksgiving Day in Tulsa with my family. Ralph spent the day sleeping on the floor. That is quite uncharacteristic. He has been on antibiotics and breathing treatments since last Sunday. I would not have taken him on a trip if I thought he was not getting better.

We spent last night and all day today in the PICU. Ralph needed 5 liters of oxygen to keep his sat levels up. He has steadily improved all day and has weaned down to 1 liter. I'm guessing we will go home tomorrow. Normally our trips to the PICU are disastrous. This time is a nice change. Thank God.

Saturday, November 22, 2008

Melissa, a new blogging friend that I met over at MomDot.com, has given me an award! You should check out her blog here:

I am especially honored for two reasons: This is my first ever blog award and this is an award from a lady, whom I just "met" online. We may have just met, but we have at least one thing in common - we have a heart for "the least of these" She has a son with special needs like I do and she enjoys volunteering and visiting at an assisted living establishment. She makes the sweetest comments on my blog! I'm proud to have introduced her to Reece's Rainbow International Down Syndrome Orphan Ministry.

Thank you Melissa! I'm so glad to "cyber-meet" you and the award means a lot to me.

Here are the guidelines for receiving this award:1. Put the logo on your blog2. Add a link to the person who awarded you3. Nominate 10 other blogs for this award4. Add links to those blogs5. Leave a message for your nominees on their blogs6. Give a reason why you consider their blogs cool

Okay, here goes to pass on the bloggy love. There is one new blog I am giving this award to. I met her last year at kindergarten! Her daughter and my son were in the same class. She, and her partners, make incredible hand crafted handbags. I gave away one of her beautiful photo bags as the prize in my October fundraiser for Oleg. I was pleased to assist them in rolling out a new website this year - www.sassyklassy.com. Check out her new website and her blog,.

And, for the rest of my recipients:

Shelly is an incredible lady. She and her husband have adopted 2 children with Down Syndrome over the past 2 years and she always has something worthwhile to say here.

Tammy has a cute little boy named Parker. I found them during one of my marathon pulmonary hypertension research sessions. Their blog is inspiring.

Lou and her husband are incredible. They are preparing to travel to adopt a beautiful girl who needs immediate medical attention. I follow their blog religiously and pray that they can get her home in time.

Kansas Milkmaid is probably the first blog I ever read. I used to get fresh raw farm milk from this lady. She always has something interesting to share about farm life, homeschooling, and her relationship with Christ.

I love to read Meredith's blog daily. She has 4 very young children, 3 of which have Down Syndrome. She also administrates the Reece's Rainbow blog here. Busy lady, no?

So what is the great news? I got the word last night that a family has committed to adopting Oleg!!!! No, it's not us. But here is the cool thing...this same family, the Spencer's, have also committed to Pavel!!

If you've never seen the pictures of these two little boys on the Reece's Rainbow website, let me tell you how stinkin' cute they are! So now they will become brothers...how sweet is that? Both boys were at risk of being sent to a mental institution in the coming months. One more thing to be thankful for this week.

Wednesday, November 19, 2008

So, I totally blew off the MomDot Blog Party today. And, I don't even feel like writing right now, but I have to stay up for another half hour to give Ralph his medicine anyway. So here I go...

Ralph is so cool. Sometimes I just love staring at him, taking in all his coolness! He's been a bit difficult to feed lately. I'm trying to get him to eat table food. Baby food and Pediasure gets expensive after a while and he has a good set of teeth now. But he balks at anything that is not smooshy. He turns his head and he signs "all done."

I got tired of dealing with him last night so I just set a bowl of macaroni and a shrimp fork on his high chair tray. What do you know - that little booger cleaned it all up. He did really good with the fork! What he couldn't get with the fork he picked up with his hands. So now I know he's been holding out on me!

Notice the dog in the background? He loves it when I feed Ralph!

Thomas turned 9 this week. I wish I had time to scan some baby pics. He was SO chunky. And those eyes...I used to call him doll-eyes! He still has them doesn't he? Poor little guy had a fever that day. I wasn't going to force him to smile.

How do you like my 30 minute lion cake? Seems like I never take the time to do anything right these days. But he liked it and that is all that counts.

Today was my lunch at the tea room with my quilting friends. We do this occasionally and leave the kids at church with a sitter. I love to hang out with these gals. Some are moms, some are grandmas, and we have the most interesting conversations!

I get the itch to open a restaurant every time I eat at a tea room. The food was very great - my corned beef sandwich was REAL corned beef! But the service was a bit slow and they had to turn people away because the dining area was full. If they would convert some of their retail floorspace to a dining area and turn their tables a bit faster, OH what money could be made!!

Tonight, I shopped for Operation Christmas Child. I have such a hard time picking out things to go in the shoebox to be sent overseas. I'm always afraid I'll get something that is on the no-no list. I ended up getting a baby doll with a bottle, hair pretties, combs, a little satin purse, socks, stuffed mouse, a pink nubby ball, and twizzlers.

When I got home, the stuff didn't fit in the shoebox we picked out. So, I found a bigger box! We will drop this off at church tomorrow.

I also took Wesley shopping for a new coat tonight. I'm so glad he has a job now and buys his own stuff. It's hard to blow a lot of money on a coat when it is your OWN money! We went to the military surplus store. He found a great coat - long black with a furry lining - for only $18. They had a lot of really cool coats in the $150 range. I wonder how warm they are?

Tuesday, November 18, 2008

Today, make a blog post about what you do to give back during the holidays. Do you volunteer your time? If so, please tell us where. What do you do to teach your children the true meaning of the holidays?

This is Oleg! Isn't he darling?

I'm so pleased to answer the day 5 question! The Christmas season is a great time to think and act on behalf of others. The spirits of thankfulness and giving are inseparable. Although the need is great all year long, we make a special effort to give during this season. Normally we give through our church's angel tree ministry.

Our church has an angel tree decorated with colored paper stars. Each different color represents a different local organization. Some orgs, like the children's home, need people to volunteer in person to wrap gifts and accept and sort donations. Some ask you to sponsor a family by buying presents and food for the whole family. Some ask for specific gifts for a specific child or adult, usually a toy or clothing.

In years past, we have teamed up with another family to sponsor a family and provide gifts and food for their Christmas. I happen to know that this WAS their entire Christmas, giftwise anyway. We have also participated in the Operation Christmas Child where we load a shoebox full of assorted items for a young boy or girl. It's always fun AND instructive to take the children shopping for some mysterious child across the ocean, perhaps. It starts them off wondering about the way that other children around the world live. It is the beginning of compassion.

This year will be a bit different for us. I have fallen in love with children with Down Syndrome. Yes, all of them!! It saddens and crushes me that the world does not see their beauty and worth. In the United States somewhere near 90% of prenatally diagnosed babies are aborted. In other countries, babies with DS, and other imperfections, are routinely institutionalized. Many don't survive past childhood. As the mother of a medically fragile 18 month old child with DS, I'm well aware that he probably wouldn't have survived his first year had he been born in Eastern Europe.

There IS an organization that is changing things for the better! Through Reece's Rainbow, the international adoption of children with DS is showing the world that they are worthy of love, learning, and a family - simply because they are human. Do you know that many of the institutionalized children have no baby pictures? The caregivers are so certain that no one wants to adopt them that they don't even bother taking them!!

Supporting Reece's Rainbow is the way we are giving this year. They have an Angel Tree Project where you receive a beautiful Christmas tree ornament with a gift of $35 or more. There are about 100 waiting children pictured in the gallery of angels. Please take a few moments to look at these beautiful faces. Most are living in baby homes right now, but the children whose names are in red letters are facing transfer to a mental institution very soon.

Oleg, who is pictured at the top of this post, is my special little boy! I just love him. He is nearly 4 years old and will be sent to an institution next year. UNLESS...a family were to commit to adopting him! I've been raising funds for his adoption fund for the past few months. When a family commits to adopt him, the money in his fund will help offset the huge financial burden.

Will you join me in praying for Oleg and the family that God is preparing to adopt him? Will you consider a small gift to an angel on the Reece's Rainbow angel tree? Due to the sluggish economy, I guess, this annual fundraiser is off to a slow start.

When my children and I look at the faces of orphans from around the world, we better understand the meaning of a Christmas gift. When I look at the faces of the thin, sick, unwanted children, I am convinced that I am looking upon the face of Jesus. When we give to them, we are giving back to God - this is Christmas.

Matthew 25:35-40 (New International Version) 35For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, 36I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.'

37"Then the righteous will answer him, 'Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? 38When did we see you a stranger and invite you in, orneeding clothes and clothe you? 39When did we see you sick or in prison and go to visit you?'

40"The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.'

I'm trying to relate this to my children. They are already better persons from having a baby brother with Down Syndrome. They are more compassionate, more giving and more accepting than any other children I know. I told my 16 year old son that I feel God leading me to adopt a child with Down Syndrome. I asked him what he thought about this. He said that if God is telling me to do it, then I had better do it!

When Ralph's health is more stable, I'll do it. But Oleg can't wait. Oleg and many others need a mommy and daddy right away. Whatever you do this Holiday season, help someone else. True thankfulness is more than a feeling, it is doing something, taking action.

Here is a challenge: When you are feeling blue, broke, and afraid of the future, find a way to help someone else. Write a note, make a phone call, make some cookies for someone...doesn't have to be an expensive gift. You'll feel better and so will they. If you can't help me help Oleg or one of the other Reece's Rainbow angels, find someone to help! And have a Merry Christmas!

I love to bake. I love to make things from scratch. I always peeled and quartered potatoes for mashed potatoes until just a few years ago. I can't fit enough potatoes in my mixer now to keep all the big boys happy! I love to make my own bread stuffing and dinner rolls. But, I just had to give it up. I buy dressing mix, potato flakes and frozen rolls now and the world hasn't ended!

One thing I refuse to buy is pie. And Cool Whip, yuk! I prefer to make my own pumpkin pie and pecan pie for the Holidays. And REAL whipped cream is a must. This year I have a couple of gallons of cooked pumpkin in the freezer. I may try to make pies out of it. I'd share my recipes but my cookbooks are packed away from our move!

I'm a little sad because we had a glorious old pecan tree at our old house. The kids and I would head out when the nuts were beginning to drop and smack the limbs with a rake. Sometimes I would stand on the van to reach high enough. The kids would run around and pick up the nuts that rained down and put them in a plastic bin. After a few weeks of drying time, I would crack nuts whenever I had a few minutes to spare. After a while my fingers would be ripped up and sore. The shells were hard but the nuts were tasty. I guess I have to buy them from the store this year.

As far as Christmas sweets, I love to make peanut butter fudge, penuche, and anything covered in white chocolate. My favorites are dipped pretzels and peanut butter balls. For the peanut butter balls I mix natural (of course!) peanut butter with powdered sugar until it is very stiff. Then I roll the mixture into little balls and use a fork to quickly dunk them in melted chocolate. If they are not eaten up immediately I like to dip them a second time after they cool. Yeah, right.

My holiday table is the same as my regular table only we will use a tablecloth! I don't have china and my silverware doesn't match. We can't have candles in the house because the baby uses oxygen. We are traveling to my grandma's for Thanksgiving this year, so I know we will be eating on her pretty china and drinking from her nice water goblets that I remember from childhood. The little children will sit around the coffee table and eat.

My biggest cooking disaster is pretty funny since I'm always determined to make my own pies. One year I made a pecan pie that was impossible to cut into. I don't know what happened! I just remember the kids laughing at me trying to cut into this concrete pecan pie. I finally picked the whole pie up out of the pan and broke it in half with my hands. Now everyone is cracking up! It must have been 8 or 9 years ago, but the older kids still remember.

Saturday, November 15, 2008

I seriously can't believe that it is November already. Each new month is sneaking up on me. And then, it's gone! My mother called today to ask about Christmas lists. Christmas?! I'm still trying to figure out plans for Thanksgiving. Funny though, as I was cruising down the main street of a nearby small town tonight, I noticed a Christmas tree all decorated and lit up!

Oh, about the deer neck stew...it was delish! I was concerned at first that I'd have to give it to the dog, but it turned out quite good. The meat was very tender and tasty. Better than any old beef stew I've had. I added 5 pounds of gold potatoes and 1 pound of carrots. I did run out of carrots, but it was all I had on hand. Ralph even liked the stew!

Ralph has been coughing at night and I noticed that he has a lacy red rash all over his trunk and face. Viral, I'm certain. He isn't interested in eating much, but he is drinking fine. His sats are good, too. I'll give him until Monday to perk up before I call the doctor.

James has been coughing, too. And sneezing. He was on the phone the other day when he had to sneeze. Did your mom ever tell you not to hold in a sneeze? She was right. James tried to hold in his sneeze and felt something pop in his chest. He's been in a great deal of pain ever since. It's either a rib out of place or a muscle strained.

Richard is at a youth convention in Oklahoma this weekend. Wesley is working today. Chipper had a music festival all day today. Thomas had a sleep over last night. I'm looking forward to Thanksgiving weekend when we will all be together! I'll leave you with a picture of Ralph on his rocking giraffe. Giraffe? I know, it's weird, huh?

Friday, November 14, 2008

DAY THREE QUESTION-Have you started your Christmas shopping yet? Do you budget for the holidays? Do you always stick to your budget? Share with us any budgeting tips you may have!

Oh boy! I have just started THINKING about Christmas presents. In the past, I normally would have picked up a few things here and there already. I would have found something special on clearance and stashed it away.

This year is a little different. We are still playing catch-up from when we got behind on our bills. Ralph's medical bills are still rolling in. And, we've had two house payments for a long time until just last month when we FINALLY sold our old house. Phew!

I've never budgeted for the Holidays. Maybe I should, but I just don't. I'll make a list for each child of things that they need and want. Daddy and I will go over the list and shop for them together. This may take more than one trip! LOL

Since I don't have budgeting tips to share, I'll share a cheap-o gift idea. There have been other lean Christmas times for us. One year when I had to literally clean out the couch cushions for loose change, I made rice bags for each child. I bought a large bag of rice from a warehouse store. Then I found some fabric remnants at Wal-mart. I made large 9 x 13 pouches and filled them with rice and sewed them up tight.

These rice bags were the best gift ever! Everyone loved theirs...and we began the rice bag ritual at bedtime. Each child got to put their rice bag in the microwave for 3-4 minutes and head off to warm up their cold bed. Sometimes they would warm one up for their feet while doing homework at the kitchen table. Sometimes I would swipe one to use for myself!

I hope your Christmas shopping is fun and that you don't break the bank!

Thursday, November 13, 2008

Today is day two at the MomDot blog party and we are talking about our favorite Holiday traditions and traditions that we want to start. The traditions of my family growing up were very different from the traditions of my husband's family. This caused some confusion and friction early on. We soon decided to just do things our own way.

I was used to large family gatherings at Thanksgiving. We dragged out all of the table leaves, all the chairs and sometimes a piano bench. Sometimes we needed a separate little table for the children. I remember swiping stuffed celery and black olives while waiting for dinner to be ready. I remember sitting on phone books so I could be high enough to reach my plate. Turkey sandwiches for supper later. Football zombies passed out on the family room floor. Cousins!

I believe that my my hubs would usually spend Thanksgiving at deer camp while growing up. A four day weekend was not to be wasted during deer hunting season! I'm not sure if his mom cooked anything special...

Starting in 1999 when we had a mid-November baby, I stopped trying to be my grandma and I cut myself some slack in the cooking dept. That year we had pizza and tater tots for Thanksgiving dinner! It was the most relaxing Thanksgiving day ever! A couple of years later we had an October baby and we did the same thing again. I still appreciate a traditional dinner, but I don't kill myself over it anymore. I think it would be a nice tradition to start inviting single, or lonely people to share the day with us. What do you think?

This year the ten of us will be travelling 3 hours for one of those old-time family Thanksgiving dinners. It's going to be crazy, but you never know if you'll get to spend another Holiday with the ones you love. More important than the 5 pies I'm bringing are the memories we'll be sharing and making. Like the MasterCard commercial...priceless.

As far as Christmas goes, we always like to put up the tree at Thanksgiving. Growing up, we would wait until it was closer to Christmas, but my philosophy is why not enjoy the festive decorations as long as possible? With eight children I don't do any of the decorating. I hand out ornaments with hooks to the kids one at a time and they trim the tree! The big kids help lift the little ones to place ornaments up high and help spread them all out nicely. I take pictures also.

We love to watch movies together at Christmas time. It' a Wonderful Life is a favorite, along with The Christmas Story. We also play games, although it is hard with big AND little kids to find a game that everyone can play. I remember playing charades with my family as a child. I'd love it if I could get my children to play charades!

On Christmas morning, it is ridiculous! Thankfully, my kids have always slept until a reasonable hour. They get to snuggle in bed with us until everyone is up and then we all go together to check under the tree. Then the kids go in the hall and start over so we can take the fake surprise pictures, because we forgot to get the camera ready the first time.

Last year was a difficult Christmas. Ralphie was in the hospital from December 17 - 31. I just cannot bring myself to leave him when he is there, so I didn't get to spend much time with the other children over Christmas break. I did come home to go to church on Christmas eve and wake up with the other kids. When I got back to the hospital, I found that Santa had visited Ralph, too! What a crappy way to spend your first Christmas, huh? We celebrated again on New Year's Day so he could open some presents at home.

I don't know about you, but I get a little blue when the decorations come down. It would be fine with me if my house was always Christmassy! What are your family traditions? Share them with us and be sure to thank today's sponsors of this fun blog party at LaPlates, Let's Go Strolling and Natity's Designs.

Tuesday, November 11, 2008

Today is my major shopping day. It just about kills me to pay full price for anything. So, when I find that there are staples on sale AND I can find coupons for them, then its stock up time! This week is tomato sauce, diced tomatoes, Lysol, Listerine, and rice week. After my 6 trips through the checkout, due to limits, I'll have enough tomatoes and rice to last for the winter. Here is my receipt from this morning:

I bought 10 large cans of tomato sauce, 10 large cans of diced tomatoes, 5 boxes of popcorn, 5 boxes of toaster pastries, 2 cans of green beans and 4 candy bars. $23! With a large family, it pays to stock up. I plan meals around what is on sale and what I have on hand. Besides, in this political climate, it can't hurt to have some goods stashed away.

Speaking of what I have on hand - my husband brought me a deer neck last night! Sorry if you are not into eating animals! I think that deer are very beautiful - I don't know if I could shoot one. But, they also happen to be very tasty!

James and the boys cut up two deer last night and after many hours they were very tired and sore and didn't want to deal with the neck. I was hoping that it would make a good stew but I can't fit it in my stock pot! I'll have to let you know how this turns out because I've been simmering for 14 hours now and I still can't get the lid to fit!

The stew is looking good and smelling yummy! I will let the meat cool in the broth before I pick through it for gristle and bones. Tomorrow I'll add the veggies and bake some bread and it will all be ready for an early dinner.

I didn't quite finish my shopping today. The stores ran out of tomato sauce before I could get back tonight. I ended the day nearly on target though :-) All together I spent $100.89. Only over my budget by $0.89! For this I got:

50 - 28 oz. cans of tomatoes - sauce, diced and crushed

22 rice mixes - jambalaya and such

10 boxes of popcorn

9 boxes of toaster strudel

5 cookie mixes

5 boxes of cereal

5 cans of Lysol

5 bottles of Listerine

4 boxes of fruit snacks

a couple of other misc. items

I hope you don't mind me braggin' a little bit. I'm really glad that I got the Lysol today because Rose is not looking good. She has been whining for a few days and now it appears that she has pink eye! We'll be extra cautious from now on through cold and flu season to wash hands and spray doorknobs and telephones and other things that people like to touch. I can't imagine how pitiful Ralph would be if he contracted pink eye, too.

Monday, November 10, 2008

Last night was rough. I had to get up many times to put Ralph's cannula back on when the O2 meter alarmed. One time his sats didn't come back up after a minute so I had to go check the oxygen tank. Yep, empty. Changing tanks in the middle of the night is not my favorite thing to do. I was convinced that it was almost time to get up anyway, but when I looked at the clock it was only 4 am!

Later, James was kind enough to get up an fix breakfast for the little kids so I could sleep a bit longer. I didn't get more than 10 or 15 minutes before Ralph woke up. It is funny to watch him wake up. He will sit up for a minute and flop back down. Then he will roll over and over and play with his feet. I like to lay there and watch him for a while.

I watched him a little too long today because when I got up to change him and make his medicine I found that he had poop up to his armpits! There is nothing like waking up to this kind of mess. I carefully wiggled him out of his shirt and cleaned him up as best as I could before dumping him in the tub.

Even though the weather today was dark and rainy and cold, Thomas had a good day at school. He would have been done before lunch if not for science. He is learning how to read and take notes. This is painful and slow. And it is so hard to stay awake when the weather is like this.

Tonight was chili night, perfect considering the weather. I normally make chili and homemade cinnamon rolls on Monday nights. I didn't get the dough started early enough today, so I (horrors!) bought some rolls from the store. I'll do better next week, I promise.

We didn't get to sit down together anyway because James and the big kids were cutting up the two deer that he shot yesterday. Two deer! In the space of about 15 minutes. Isn't that impressive? It is a lot of work to cut up, but now we have more burger in the freezer. I hate to run out of deer meat. Ground beef just tastes dirty and greasy to me.

Friday, November 7, 2008

I'm drawing a name tonight. The lucky person will get a customized handbag from www.sassyklassy.com! I'm so happy that $235 was contributed to Oleg's adoption grant fund. I'll be even more tickled if some wonderful family commits to him during the Christmas Angel Tree Project!

Here's what I did - I put all the names into column A in a spreadsheet. I then generated a list of random integers and put them into column B. Then I sorted the two columns by the numbers in the random list. This gives me a random list of names. Next I used a random integer generator to pick one number - the corresponding name is the winner! Am I a geek or what?

The winner is - #12 Laura Mendez! Woo-hoo! I can't wait to see how your new creation turns out.

I spent the day organizing my bills and stuff. I just put the bills in a pile until I have money to pay them - great system, huh? The pile was getting out of hand, but now it is under control again.

Part of the big pile is claim forms for our health care flexible spending account. This is a way to use pre-tax money to pay for medical bills. For years I have sent in copies of receipts along with a form to be reimbursed for medical expenses. This year our company sent out a Visa card to use instead.

I was so happy about not having to send in receipts and forms. It was going to be great. Except one thing - 3 of Ralph's 4 prescriptions are from a compounding pharmacy. When I use the Visa card there the payment gets rejected every single time. The dentist payment was rejected, too. So today I spent today tracking down receipts and filling out forms - the very thing I thought I wouldn't have to do anymore. GRRRRRRRR!

I personally put Ralph's cannula back on 17 times today. (Other people in the house also replaced it a time or two.) Yes, I counted. I seemed like 100 times, but it is not right to exaggerate, so I counted.

I have a long mirror propped against the wall in the hallway where Ralph plays. It is so funny to watch him crawl down the hall while looking in the mirror! He crawls back and forth, looking at himself all the while. He even shares his bottle with the baby in the mirror, so I know he won't die of thirst like Narcissus!

Ralph has a couple of new signs, eat and all done. He uses both appropriately. We are going to start working with flash cards very soon. My goal is to teach him some sight words along with their signs. He's a very bright boy. I don't see any reason why he shouldn't be learning to read!

Thursday, November 6, 2008

Today is the last day that you can chip-in for Oleg through my blog. He is still waiting on a family to commit to him. I think he is a cutie, but then I have a big soft spot for little boys!

Oleg is one of the many beautiful children which are photo listed in the Waiting Angels Gallery at Reecesrainbow.com. You may want to consider a gift to one of the other angels listed. You can also see the totals of the gifts received for each child since the Angel Tree project started on November 1. Pretty impressive, huh?

Wednesday, November 5, 2008

Thanks to my friend Pam at Rhett's Journey I found out that November is Pulmonary Hypertension Awareness Month. There are not many words, outside of cancer perhaps, that strike terror into the heart of this mother like pulmonary hypertension.

I describe PH to people as high blood pressure in the lungs. It's really a big deal because the high pressures in the lungs cause the heart to work harder to push the blood through, resulting in right heart failure. This can be deadly as the heart simply wears out.

Symptoms of PH are chest pain, coughing, shortness of breath, edema, fatigue and lightheadedness. OK, now imagine asking a baby if they have chest pain or feel fatigued! Ha! Ralph has a regular EKG, and also an echocardiogram which can approximate the pressures in his lungs. He has had a heart cath done twice. With a heart cath the doctors can directly measure the pressures in the right heart.

Ralph is on PH medications as well as oxygen around the clock. He doesn't mind wearing his nasal cannula most of the time. If I leave him in his jumper seat too long, though, he rips it off and starts chewing on it! Also, if his 50ft. of oxygen tubing gets hung up on something he will take it off and keep right on crawling. I suspect that he has learned that I cannot find him if he crawls away without the cannula on!

At night I monitor Ralph's blood oxygen levels with a pulse oximeter. This is a handy dandy piece of equipment, even though it doesn't work when he is awake. When Ralph was sick with rotavirus last Spring it was the oximeter that let me know he needed immediate medical attention. I could not get a signal on either of his feet that one morning. The meter worked on my finger, so I knew that it was working properly. I figured out quickly that his pulse was too weak for the meter to pick up. We raced to the doctor's office and then on to the hospital immediately. Just in time, too.

Ralph has been nearly completely healthy since that scare. And since his heart repair in June and an adjustment in his medication in July, his heart size is improving and his pressures are normalizing. We are on a long and winding road. Will he ever outgrow his PH? Children sometimes do, although it is considered a chronic and incurable condition for adults. Will he EVER get off oxygen? I sure do hope so. Probably not for a while.

When you are dealing with PH, Down Syndrome doesn't seem so scary. Sometimes it seems that the docs, at the hospital especially, are so hung up on Down Syndrome that they don't see him as a baby with PH. I get so worried about the PH that I sometimes forget about the DS!

I'm convinced that there are certain aspects of gene over-expression that come along with Down Syndrome that may aggravate his pulmonary hypertension and it drives me nuts. I don't have the knowledge to read and understand the research in these areas and I don't really have anyone who is all that interested in helping me.

Perhaps Ralph will live to see amazing advances in treatment! We briefly discussed a heart-lung transplant with the doctors in Kansas City last year, but the survival rate is poor and can be a case where the cure is worse than the disease. New drugs are being developed, but many take a terrible toll on the liver. I'm quite thankful for Sildenafil, AKA Viagra! It has done wonders for him. This drug was initially developed for high blood pressure but the researchers found that it had an interesting side effect - and the rest is history.

I left to run an errand the other night and came home to this sweet scene. Richard doesn't get to spend much time with Ralph so this warmed my heart. I consider my children to be gifts to one another. What a fortunate bunch!On another note, Richard is participating in a "Doc for a Day" program this weekend at our local medical school. He will learn about tying surgical knots, intubation, cardiac skills, obstetrics and how to prepare for medical school! He is a sharp, confident young man and I hope he finds something to get excited about. He will be successful at whatever he chooses to do, but I feel he would make an excellent surgeon.

Tuesday, November 4, 2008

I said that I wouldn't sit around watching TV tonight and I'm not. I'm not really into drama like I used to be anymore. Just tell me when it is over, please.

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I love the whole idea of homeschooling. To me, it seems to be the most efficient and natural way for a child to learn about the world. But it is not always a picnic! I have found a great incentive to get school work done in a reasonable amount of time. If Thomas can get his required work done before 1pm then he can swim laps at the YMCA or take a short field trip! We can easily do this two or three times a week.

Today Thomas finished the equivalent of 13 lessons before 1pm, so I took him and Leroy with me to vote. We drove over to our little community building after lunch to find no waiting. The boys got an "I Voted" sticker, but not one offered me one. I was done in 5 minutes and we talked about elections and voting as we made our way down to the YMCA. When life and learning intersect it makes for a great field trip!

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The leaves are starting to fall here in Kansas. I've been waiting for this because I want to try shooting some portraits of the kids in a Fall scene. I've been keeping my eye out for a place to do this. I may check out the county park here in a few days. If my photos are nice enough I may have trouble getting prints made at Walgreens. The lady at our photo counter is a stickler for a copyright release!

Saturday, November 1, 2008

After Halloween last year I was traveling to Kansas City for a memorial service. I stopped for gas in Olathe and noticed a pumpkin stand next to the gas station. There was a sign that indicated the pumpkins were free! I stuck 5 of them in the van and went on my way. When I got home the next day I surprised the little ones with a pumpkin of their own.

We decided to try to cook them and make some pumpkin treats of some sort. The best thing we made was pumpkin butter. I don't care what all the recipes say, a large carving type makes fine pumpkin butter.

I was hoping to find some pumpkins on sale this morning, but was surprised to find nothing left! Sure, they have the little pie pumpkins at the grocery store, but they are $0.78 per pound. Unreal!

Since we carved our jack-o-lanterns at the last minute yesterday, I thought I might still be able to use them. Since I delegated the cleaning and carving to my hubby, he naturally delegated the cleaning to the kids. They did a pretty poor job of cleaning them out. That's OK, though, because I was able to peel the outside and the inside and get a nice pot of pumpkin cookin'.

This pot is overflowing with one large and one small pumpkin. I add a little water and cook it to death. When all the chunks are soft I blend with a hand blender. Then I add 4 tsp cinnamon, 2 tsp. allspice, 1 tsp. ground cloves and a couple of cups of sugar. It is almost midnight and the pumpkin butter is still cooking. I'm leave it on warm all night long and it will be reduced in the morning. I'll taste it then to see if it needs more sugar then let it cool. Some will go in the fridge in a plastic container and the rest will go in the freezer in freezer bags. Yum, enough for the rest of the year, I hope.